It’s been a rough and difficult summer.  For reasons still unknown, though I have very strong suspicions, Josiah spent much of these past few months screaming.  Screaming may not be the best adjective but ‘crying’ just doesn’t seem to adequately describe the painful noises we all became accustomed to most every day.

He was in the hospital 3 times and sent home 3 times with no answers, no great insight, no helpful protocol to alleviate whatever it was causing him to shriek.  I truly believe he was such a difficult patient it was easier to tell us, “Take him home where he will be more comfortable and see if that helps.”

It didn’t.  I knew it wouldn’t.

We had tried everything we could possibly think of which was why we were in the hospital in the first place. We were out of ideas.

I wanted to shout, “YOU take him home!”

I wanted someone to figure our why Josiah was in such incredible pain.  Why. despite our best efforts to help him, was nothing working?  Why did this poor kid continue to writhe in distress day after day?

I wanted someone to FIX him.  His screaming became so incessant it was almost unbearable. He cried all day, then stayed awake and cried through the night.  His voice was hoarse.

As if things weren’t bad enough, Josiah had an allergic reaction to ant bites which caused his face and lips to swell so quickly we raced him to the emergency room.  We now keep an epi pen and Benadryl with him at all times.

Shortly after, he developed a bruised, very painful looking hematoma on his right hip from punching it so hard.  It was a terrible, horrible, no-good, very bad summer.  Josiah was miserable!

It’s so desperately difficult watching a loved one suffer. And so incredibly challenging to fail at every attempt to alleviate the suffering.

God Bless Josiah’s amazing caregivers.  Their patience, compassion and loving devotion is astounding! We are indebted and grateful.  Quite honestly I’m not sure I would have stuck around had he not been my own child.

With all the difficult twists and turns this path has lead us down the past 17 years, by far the last few months have been the most difficult.  Without Josiah’s support staff we would have been lost.  They hung in there and endured every step of the way.

Mid July I had reservations to fly out of state for 5 days.  As much as I desperately wanted to escape, I came very close to canceling the trip.  It didn’t feel right to leave with Josiah so distraught.   At the urging of those who knew I needed some time away AND because I was going to celebrate my mom’s 87th birthday I decided to go after all.

Guess what?  While I was gone, Josiah turned a corner.

No one knows exactly why or precisely when, but apparently, rather suddenly, things greatly improved. The caregivers commented, “Josiah is back!” They sent me pictures of him smiling.  NOT screaming, but smiling and happy!

And since then he continues to be happy!  He’s joyful and giggly and much more like he used to be.  It’s as if it was all just a very bad dream and now it’s over.

It’s been a few weeks since our boy has ‘been back’.  I’m holding my breath it lasts.  More than anything I want him to have the best quality of life with no pain or suffering.  I want him to be full of joy, excited to try new things, to learn as much as possible and to make a positive impact on everyone he meets.

I pray daily for a miracle for Josiah.

But I’m no fool.  I can read between the lines. Despite my best efforts, countless hours of research and every viable intervention, Josiah actually improved in my absence.  This can only mean one thing.

Maybe it’s time for me to find a new home….